When my husband Rich and I found out we were pregnant with our daughter Vivian in 2010, we were excited and anxious.
Four years earlier, we lost our first child, Renee, to Autosomal Recessive Polycystic Kidney Disease (ARPKD). The condition caused her kidneys and liver to swell from cysts formed in utero, affecting their vital functions and taking up the space her lungs needed to grow properly. We were completely unaware of her condition before her birth. When Renee arrived, her lungs were too underdeveloped to sustain her breathing. We had two precious days with her before she passed.
We took a long time to grieve before considering another baby. With our doctor’s support, we tried again. Then, amazingly, there was Vivian.
We were thrilled, but we struggled to let ourselves feel we could “get ready” for her. We walked this journey before and worried it would lead to the same heartbreaking place. Vivian’s early ultrasounds showed no sign of ARPKD and we felt encouraged about not experiencing a recurrence. Then, my 32 weeks ultrasound showed Vivian’s kidneys suddenly looked enlarged. She had ARPKD. It was a crushing moment, but we were determined to give Vivian the best chance we could at survival.
When Vivian was born six weeks later, green-eyed and beautiful, she was breathing on her own. The relief was overwhelming, but so were our feelings about the long road ahead.
Our doctors were clear about what she needed: to have her kidneys removed, sustained dialysis, and eventually a kidney and liver transplant. They were also clear that we needed to transfer to a specialized children’s hospital near our home in Missouri.
At two weeks old, Vivian had both kidneys removed. Repeated surgeries and infections - including a life-threatening bacterial infection in her abdomen that put her in the intensive care unit for a month – meant she only spent six weeks of her first 11 months with us at home. Rich made the loving decision to step back from his career to lead Vivian’s four-days-a-week dialysis and she was listed for transplant after turning two.
Her case became more complicated as she grew and I will forever remember the moment our nephrologist, whose guidance we trusted, told us that if it Vivian were her child, she’d take her to Lucile Packard Children’s Hospital Stanford.
We flew to Palo Alto to meet with the Stanford transplant team. Everything clicked. The team agreed that, when the time came for transplant, we’d need to be here and jumped headlong into a treatment plan.
After two years and a near-match, we finally got “the call” for both a kidney and liver transplant match in August 2017. I think our bags were in our hands before we even hung up the phone.
That phone call also brought us to Ronald McDonald House at Stanford. Vivian’s surgery went very well, but her dual-transplant recovery would take time and we needed to be together and close to her medical team. With home halfway across the country, staying at the House was the only option for our family.
Everything we need right now is available at the House. We have each other, a comfortable place to stay, and easy access to the hospital. We also have other families to share this experience with, which we didn’t have at home. Our stories are different, but we’re all here for the same reason: our kids are sick and we need to be together. That’s what sticks with me – the community at the House. It helps me feel supported and empowered to help other families find their way too.
Just watching Vivian play is a joy. It sounds so simple, but taking her outside to run around wasn’t an option before. She was too sick to play with other kids. At the House, she can spend her afternoons with new friends and volunteers, laughing and having fun. She loves the new House School, and seeing our smart, spunky, proud first grader keep learning during recovery has been invaluable. Having this safe, playful, learning environment around our daughter has helped me and Rich relax for the first time ever.
Now, we’re planning our return home and for life with Vivian post-transplant. We’re excited to see where this new beginning takes us. We’re grateful for the time the House gave our family and everyone who makes this special place possible for families. Staying here helped us get the best care for our daughter and we will carry this experience with us forever.
-- Richard & Cara Lemire